As part of the Youngsters’ Community Review and Round-up in the December issue of Global Perspectives, two of the Youngsters’ Community Advisory Group give us their reflections on 2023 and share their excitement about what 2024 has in store. We hear from Dominika Blacharska, HAE Poland; and Kamila Moran Salaverry, HAE Peru.
How do you feel 2023 has been for the HAEi Youngsters’ Community?
Dominika: 2023 has been a great year for the Youngsters’ Community. I’m very proud of all the work we have done. Because of the conference in Munich, we have grown a lot! It was an amazing experience to see so many youngsters joining our family. For some Youngsters, it was their first time at a meeting, and it’s really fantastic that they quickly made a connection and had the feeling of being understood.
Kamila: For me, it was very special to have the opportunity to meet others and learn about the different stories of the community. It has been a memorable year in which we were able to share projects and establish ideas for new goals and plans that will come in the future, so stay tuned!
What projects were you involved in this year?
Dominika: One project I participated in was an awareness month, where we created posts on our Instagram. It was a great opportunity to tell youngsters about the most important things in HAE. For example, we made a post for caregivers with advice on dos and don’ts with HAE.
Earlier this year, I took part in the LEAP Program. It was the best experience of my life! I could learn what and how to do something for youngsters in my country. Because of LEAP, I was able to make the first Summer Camp for Polish Youngsters. We also hosted our Youngsters’ Track at the 2023 HAEi Regional Conference EMEA! It was very stressful but such a proud moment!
Kamila: It made me very happy to be able to help with some projects for the advisory group. One was during the awareness month when I shared posts for “a week of our lives,” on our HAEi Youngsters’ Instagram, there was the 2023 HAEi Regional Conference EMEA, and without a doubt, one of my favorites was the “Youngsters’ Spotlight” on Instagram that we did in March. It was a nice way to learn more about community members around the world.
Compared to 2022, how do you feel about the Youngsters’ Community in 2023?
Dominika: In 2023, the Youngsters’ Community definitely got bigger with more youngsters, more projects, more engagement, and more memories! It was an important year because we could finally meet in person! Looking back on 2022, when we had online meetings, hugging the person (at last!) was amazing! We are happy to finish this year by launching our first-ever Social Media Internship Program. If you are passionate about social media, building a community, or want to make a positive impact – think about applying! You can find more information here on our HAEi Youngsters’ website.
Kamila: Having the opportunity to join the group this year helped me to share the message of caregivers and how important it is to take care of our closeness to the patient. Even though I’ve only been a member for a short time, I can say that it has been incredible and even better than I expected. I feel grateful to Nevena and the other group members for giving me such a warm welcome. I’ve got the confidence to share my ideas, and I don’t feel worried about asking for help or guidance in our activities. It’s an amazing group!
What are you most excited about for 2024?
Dominika: I can’t wait to see what 2024 brings. We have many ideas and even more amazing Youngsters who want to get involved. 2024 is our year!
Kamila: I am excited as a new year means the opportunity for new members to join the advisory group, to be able to listen to their ideas and share experiences ;)
